The criteria for defining cases is an important topic in research and medicine. For chronic fatigue syndrome, it has been a vexing topic whether one considers CFS to be a new condition identified with the 1988 case definition (Holmes, et al.) or a new (if unwanted) name for a condition that has existed for decades, if not centuries, by other names. Here we will examine the cluster of symptoms known aspost-exertional malaise (PEM) and its importance in defining the condition. PEM is also known as post-exertional relapse. It refers to the aggravation of various symptoms following even modest physical or mental exertion. (Editors note: Please see our series of articles on PEM by Jennifer M. Spotila, J.D., posted at http://bit.ly/pem-series)

The Fukuda et al. (1994) criteria as well as the empiric criteria (Reeves et al., 2005) for CFS do not require post-exertional malaise (PEM) to occur in all patients, rather PEM is one ofeight symptoms, of which onlyfour are required. However, according to a recent review article by Jason et al. (2012), the initial myalgic encephalomyelitis (ME) case definitions required PEM as an essential feature of this illness including Ramsays case criteria (Ramsay 1988), the London criteria (National Task Force Report on CFS/PVFS/ME, 1994), the Nightingale criteria (Hyde, 2007) and the Goudsmit et al. criteria (2009). Most definitions for ME note the characteristic delay in recovery of muscle strength after exertion ends.For example, Ramsay (1988) describes it as muscle fatigability that results from a minor degree of physical exercise with which three or more days elapse before full muscle power is restored. The London criteria criteria (National Task Force Report on CFS/PVFS/ME, 1994) suggest that post-exertional malaise is precipitated by physical exertion, but also add the component of mental exertion as a precipitator of post-exertional malaise. The London criteria also suggest that exercise-induced fatigue should be relative to the patients previous exercise tolerance, but there is no specific time period for which full muscle power should be restored. The Nightingale criteria states that post-exertional malaise can be precipitated by both mental and physical activity; post-exertional malaise is defined as pain with rapid loss of muscle strength after moderate physical or mental activity, but also suggests that post-exertional malaise might be due to vascular dysfunction or peripheral nervous or spinal dysfunction (Hyde, 2007). Goudsmit et al. (2009) describes post-exertional malaise as a new onset of abnormal levels of muscle fatigability that is precipitated by minor levels of activity with symptoms getting worse during the next 24 to 48 hours. Our group (Jason et al., 2012) has recently tried to operationalize the ME criteria from Ramsay (1988), Hyde (2007), Goudsmit et al. (2009), and the London criteria mentioned in the National Task Force Report on CFS/PVFS/ME (1994).

In addition, the ME/CFS Canadian clinical case definition also required post-exertional malaise for diagnosis (Carruthers et al., 2003), and our group has tried to operationalize these criteria (Jason et al., 2012). This ME/CFS case definition has since been revised, and the recent ME-ICC criteria (Carruthers et al., 2011) require a person to have Post-Exertional Neuroimmune Exhaustion, which is characterized as marked, rapid physical and/or cognitive fatigability in response to exertion.

Many explanations for the effects of PEM have been offered, such as Dowsett et al. (1990) and Myhill, Booth, and McLaren-Howards (2009) suggestion of mitochondrial damage and/or inhibition of the oxidative metabolism, and Jammes, Steinberg, Mambrini, Brgeon, and Delliaux (2005), Pall (2007) and Twisk and Maes (2009) suggestion that PEM is a consequence of excessive (prolonged) oxidative stress after exertion. Research has yet to identify a single factor that can adequately explain the patient experience.

Exercise scientists have used standard bouts of acute exercise in attempts to better characterize the physiological experience of post-exertional malaise. Both maximal and sub-maximal exercise have been used within the ME/CFS population. For maximal exercise tests, participants are instructed at a prescribed rate (e.g. 60-70 revolutions per minute (rpm)) against a gradually increasing resistance to voluntional exhaustion or until the participant can no longer pedal at the prescribed rate (Cook et al., 2006). Standard criteria for peak effort are normally applied. For example, peak effort would be determined when participants meets two of the following four criteria as set by the American College of Sports Medicine (ACSM): a respiratory exchange ratio (CO2/O2) of at least 1.1, a change in oxygen consumption (VO2) of less than 200 ml with increasing work, achievement of 85 percent of age-predicted heart rate, and a rating of perceived exertion (RPE) of 17 or higher out of a total 20 on the Borg 620 category scale (Borg, 1978). Maximal exercise tests, when combined with metabolic measurement, are considered the gold standard for assessing an individuals maximum oxygen consumption (VO2max) or aerobic fitness. Maximal exercise tests are brief (between 5-9 minutes in individuals with CFS) (Noonan & Dean, 2000), and repeated maximal exercise tests have been used in novel ways to demonstrate cardiorespiratory and metabolic differences between CFS/ME patients and healthy controls (VanNess, Stevens, Bateman, Stiles, & Snell, 2010). It should be noted that the measurement is only considered to be valid when a participant is able to reach a VO2max without succumbing to fatigue or musculoskeletal issues first, which can occur in a disabled population. Furthermore, completion of the maximal exercise tests, particularly when repeated over two days, involve a high level of motivation by the participant, and these procedures require specific equipment and trained professionals.

In comparison with maximal tests, submaximal tests can be used to predict aerobic capacity and determine the cardiorespiratory and symptom responses to exercise over longer durations (e.g., 25-30 minutes) compared to the maximal exercise test. Thus, rather than giving one all-out effort, the patient is asked to sustain a certain level of effort for a prescribed period of time. There are many different protocols for submaximal testing (see Noonan & Dean, 2000). An excellent example is the work conducted by Light and colleagues (2011) in their work on gene expression in response to exercise in individuals with ME/CFS and FM. Light and colleagues used a moderate whole-body test that required participants to increase their pedaling on a stationary bicycle until they were able to exert 70% percent of their age-predicted maximum heart rate. This level of exertion was then maintained for the next 20 minutes of the test. Submaximal tests are used by some researchers studying disabled populations such as ME/CFS due to the belief that they have higher generalizability with the natural level of exertion necessary for eliciting a deterioration of symptoms. In fact, Light and colleagues have found that their 25-minute submaximal exercise tests elicited a worsening of fatigue and pain symptoms in individuals with ME/CFS from 8 to 48 hours after exercise (2011). Post-exertional malaise can potentially be measured by increases in the expression for sensory, adrenergic and immune genes following moderate exercise (Light, White, Hughen, & Light, 2009).

It is important to note that PEM cannot be definitively established without the inclusion of the patients self-reported symptoms. Thus, there is a need to develop self-report methods for capturing the frequency, severity and duration of this cardinal symptom. Jason and colleagues (1999) found that in a group of individuals with ME/CFS, PEM ranged from 40.6-93.8% depending on how the question of this symptom was asked. This lack of uniformity in the way PEM is measured represents a significant problem for the scientific community studying this illness.

Many have looked to the Patient Reported Outcomes Measurement Information System (PROMIS), as one possible solution as it is a free database of standardized measures that assess patient reported health status. The PROMIS currently includes self-report questions related to the impact of fatigue on functioning, physical feelings of fatigue and limitations. However, the PROMIS does not investigate triggers/causes of fatigue or duration of fatigue. Also, the PROMIS lacks questions assessing fatigue that results from physical or mental exertion; thus lacking questions that tap into post-exertional malaise. Here are several PROMIS questions: In the past 7 days what was the level of your fatigue on most days? In the past 7 days how much mental energy did you have on average? In the past 7 days how often did you run out of energy? In the past 7 days how often did you experience extreme exhaustion?

Our group developed the ME/CFS Fatigue Types Questionnaire (MFTQ), which has good psychometric properties, and is designed to measure the different types of fatigue experienced by individuals with ME/CFS (Jason et al., 2009). We measured the experience of symptoms in a group of individuals with ME/CFS compared to a healthy group. We found that individuals with ME/CFS experienced several different types of fatigue including postexertional fatigue, wired fatigue, brain fog, energy fatigue and flu-like fatigue compared to the healthy group which only experienced just an overall, general type of fatigue. The MFTQ defined the factor called PEM as abnormal exhaustion following a bout of physical activity. Items from the PEM factor included:

Dead, heavy feeling that occurs quickly after starting to exercise;
Next day soreness or fatigue after non-strenuous, everyday activities;
Mentally tired after the slightest effort;
Physically drained or sick after mild activity; and,
Minimum exercise makes you physically tired.

In another study, the abovefive PEM items from the MFTQ were confirmed as having the best diagnostic sensitivity and specificity (Jason, Evans, Brown, et al. 2011). The MFTQ PEM factor is distinct for patients with ME/CFS from the Emotional Distress factor of the Profile of Fatigue-Related Symptoms (Ray et al., 1992), which measures mood states such as depression, anxiety, and anger. In addition, as another indicator of construct validity, the Fatigue Severity Scale (Krupp et al. 1989), a measure of the impact fatigue has on ones functional ability, demonstrated stronger relationships for the MFTQ Post-Exertional factor in the ME/CFS group than the control group. These five PEM items have been included in a new diagnostic measure: the DePaul Symptom Questionnaire (DSQ), developed by our group at DePaul University to help classify people with all the major case definitions, and we currently are collecting data using this instrument.

Our research group feels that that post-exertional malaise is a cardinal feature of ME; the definition recognizes post-exertional malaise as prolonged restoration of muscle power following either mental or physical exertion.

While I agree with the conclusion that post-exertional malaise (or preferably PENE) is a cardinal feature of ME, I'm disappointed to see the case definition for such a complex disease as ME seemingly reduced to a single symptom.

Even taken on their own, PEM (here) and PENE are defined very differently. Here PEM is defined as prolonged restoration of muscle power following either mental or physical exertion. The ICC, by contrast, defines PENE as having prominent symptoms primarily in the neuroimmune regions:

A. Postexertional neuroimmune exhaustion (PENE pen-e): Compulsory

This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:

1.?Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2.?Postexertional symptom exacerbation: e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3.?Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4.?Recovery period is prolonged, usually taking 24h or longer. A relapse can last days, weeks or longer.
5. ?Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

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The CCC definition of PEM also refers to a tendency for other associated symptoms within the patient's cluster of symptoms to worsen:

Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and
mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue
and/or pain and a tendency for other associated symptoms within the patients cluster of
symptoms to worsen. There is a pathologically slow recovery period - usually 24 hours or longer
.

Hate to bring it up again but there are people that the PEM Comes and go.
I have gotten PEM better as I get out of relapse. How do you explain those that used to have it and don't have it anymore as they recover. In this relapse, I am getting out and doing 70% today but my PEM is worse than ever (not as before, where PEM improves as I get better).

@Ember: I think, from this paper and others he's written, Jason is saying PEM is the cardinal symptom, but not sufficient on it's own to define the illness: the DSQ questionnaire they are developing looks at many symptoms beyond PEM.

Hate to bring it up again but there are people that the PEM Comes and go.
I have gotten PEM better as I get out of relapse. How do you explain those that used to have it and don't have it anymore as they recover. In this relapse, I am getting out and doing 70% today but my PEM is worse than ever (not as before, where PEM improves as I get better).

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Good point. I pace specifically to avoid PEM so there needs to be context. Unfortunately Jason's DSQ currently rates PEM (ad other symptoms) by frequency and severity regardless of any pacing. So i get post-exertional fatigue regularly but malaise rarely. If I get malaise there's a fair chance I'll have a relapse too; the last one gave me 2 months of solid malaise as well as losing 2 years worth of progress.

Inester7, it would be great to know all the answers why because there seems to be a lot variables. I'm thinking the term PEM is subjective? Are we all feeling the same symptoms? I've had ME for over 20yrs and I've had periods where I felt up to 80-90% improvement for almost 2 yrs and yet PENE (which describes what I feel) is just as severe as when I'm feeling only 30%. It is *always* the same severity no matter how well I am feeling generally.
I have to stay within my boundaries at all times or else . . .

While I agree with the conclusion that post-exertional malaise (or preferably PENE) is a cardinal feature of ME, I'm disappointed to see the case definition for such a complex disease as ME seemingly reduced to a single symptom.

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I agree 100%. I would say that PEM is a good distinguishing characteristic of this disease early on, and may be useful for early diagnosis. But many of us are simply too sick to get PEM on a day-to-day basis. We simply don't have the energy to take our body to the limit where we would get PEM.

Going to simplify this a bit - to me PENE is feeling like shit after exertion or after no exertion at all, as long as it's inexplicable. I can now exercise relatively vigorously again but still have days where I feel aches/pains and flu-like symptoms and just crappy, not necessarily correlated to obvious exertion anymore. As nice as it is to try and narrow down the criteria I feel this is somewhat a lost cause for complex conditions like these as people have all sorts of variations and there will be always people wrongfully included/excluded. IMO it would be worth more to focus on healing the individual patient with whatever sticks with them - including thorough testing - and then compare the successes to come up wit therapies that are more generally applicable for chronic pain and fatigue codnitions. This doesn't mean that serious groundwork studies aren't useful, but a functional approach can be taken for the individual without obtaining an explanation for all the cases out there first. Often the experimental or chaotic arm of research/medicine won the race over the ground-work arm (e.g. pennicillin) so both should be supported and patients trying to be treated fully even if this is not fully understood yet.

This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal (HPA) axis.

Using Fukuda et al. (1994) criteria and PEM, fatigue, and a subjective feeling of infection as discriminatory symptoms we recently established that ME, CFS (Fukuda/not-ME) and CF are distinct diagnostic categories.

ME patients have significantly higher scores on concentration difficulties and a subjective experience of infection, and higher levels of IL-1, TNF?, and neopterin than patients with CFS.

Hi, i took part in the De Paul research questionnaire that they mention. I don't think they are saying PEM or PENE is a main defining symptom, but that it is important it not be overlooked as it ios in some of the definitions. The 2 definitions for the illness that are most favoured by patients both include PEM (or PENE) as being an important and defining factor.

Moving on to other comments about it being a defining feature of M.E, i am becoming convinced that this is not the case. After having M.E for 17 years and not having an official diagnosis until after i had had private testing i am now beginning to wonder if i could have been misdiagnosed. I have never had other conditions ruled out - i have symptoms that would be consistent with LUPUS SLE, Multiple Sclerosis and Sarcoidosis. I have never been tested for these nor had brian scans despite having svere cognitive problems, myoclonus, spastic symptoms and Dysphagia. This recent thought has led me to spend a lot of time recently researching these other diseases and spending some time on thier forums and boards. People with sarcoidosis definately compalin of extreme fatigue brought on by minimal exertion and lasting for days - or coming on after a period of time.
Then i looked at the tests that confirmed i had M.E - tests that show mitochondrial abnormalities, oxidative stress, low antioxidant levels and high cell free DNA. I discovered that both Sarcoid and MS have similar results - oxidative stress, low antioxidant and nutritional status plus high cell free DNA. What my tests tell me is that i am ill - very ill - but not tht i have M.E.

I am no longer convinced that PEM are solely defining features of M.E. Sarcoid and MS patients complain that this symptom and general fatigue are under studied and misunderstood by their doctors, being played down and considered benign, despite wrecking their lives.

Hi, i took part in the De Paul research questionnaire that they mention. I don't think they are saying PEM or PENE is a main defining symptom, but that it is important it not be overlooked as it ios in some of the definitions. The 2 definitions for the illness that are most favoured by patients both include PEM (or PENE) as being an important and defining factor.

Moving on to other comments about it being a defining feature of M.E, i am becoming convinced that this is not the case. After having M.E for 17 years and not having an official diagnosis until after i had had private testing i am now beginning to wonder if i could have been misdiagnosed. I have never had other conditions ruled out - i have symptoms that would be consistent with LUPUS SLE, Multiple Sclerosis and Sarcoidosis. I have never been tested for these nor had brian scans despite having svere cognitive problems, myoclonus, spastic symptoms and Dysphagia. This recent thought has led me to spend a lot of time recently researching these other diseases and spending some time on thier forums and boards. People with sarcoidosis definately compalin of extreme fatigue brought on by minimal exertion and lasting for days - or coming on after a period of time.
Then i looked at the tests that confirmed i had M.E - tests that show mitochondrial abnormalities, oxidative stress, low antioxidant levels and high cell free DNA. I discovered that both Sarcoid and MS have similar results - oxidative stress, low antioxidant and nutritional status plus high cell free DNA. What my tests tell me is that i am ill - very ill - but not tht i have M.E.

I am no longer convinced that PEM are solely defining features of M.E. Sarcoid and MS patients complain that this symptom and general fatigue are under studied and misunderstood by their doctors, being played down and considered benign, despite wrecking their lives.

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I couldnt agree more i think this ties in with what ive been saying here. its all a mess. i was diagnosed about as loosely as one can get .

Hi, i took part in the De Paul research questionnaire that they mention. I don't think they are saying PEM or PENE is a main defining symptom, but that it is important it not be overlooked as it ios in some of the definitions. The 2 definitions for the illness that are most favoured by patients both include PEM (or PENE) as being an important and defining factor.

Moving on to other comments about it being a defining feature of M.E, i am becoming convinced that this is not the case. After having M.E for 17 years and not having an official diagnosis until after i had had private testing i am now beginning to wonder if i could have been misdiagnosed. I have never had other conditions ruled out - i have symptoms that would be consistent with LUPUS SLE, Multiple Sclerosis and Sarcoidosis. I have never been tested for these nor had brian scans despite having svere cognitive problems, myoclonus, spastic symptoms and Dysphagia. This recent thought has led me to spend a lot of time recently researching these other diseases and spending some time on thier forums and boards. People with sarcoidosis definately compalin of extreme fatigue brought on by minimal exertion and lasting for days - or coming on after a period of time.
Then i looked at the tests that confirmed i had M.E - tests that show mitochondrial abnormalities, oxidative stress, low antioxidant levels and high cell free DNA. I discovered that both Sarcoid and MS have similar results - oxidative stress, low antioxidant and nutritional status plus high cell free DNA. What my tests tell me is that i am ill - very ill - but not tht i have M.E.

I am no longer convinced that PEM are solely defining features of M.E. Sarcoid and MS patients complain that this symptom and general fatigue are under studied and misunderstood by their doctors, being played down and considered benign, despite wrecking their lives.

Thanks for the link to the other thread Free - we seem to have started discussing the same thing on two threads. I have also been reading the M.E V MS thread (not finished it yet) and the similarities between all these autoimmune diseases is very striking - including the patients experience. It can take people with MS and Sarcoidosis years to get a proper diagnosis - it took me 17 years- and infact i havent been positively diagnosed by anyone - nor had other conditions ruled out.
Why are the researchers who are studying M.E/CFS and PEM not looking at patient experiences in other diseases?
I am beginning to think that only Dr Hydes very rigorous testing with spect scans etc can truly diagnose M.E. Or else we need a review of fatigue in all illnesses with a distinction made about 'our' particular type.
Rambling now because im watching telly at the same time (apologies)
Justy.

The DePaul group's definition of PEM may have been influenced by their wish to operationalize ME. They write that their group (Jason et al., 2012) has recently tried to operationalize the ME criteria from Ramsay (1988), Hyde (2007), Goudsmit et al. (2009), and the 'London' criteria mentioned in the National Task Force Report on CFS/PVFS/ME (1994). Hence their conclusion that recognizes prolonged restoration of muscle power following either mental or physical exertion as a cardinal feature of ME.

Their description of PENE is incomplete and misleading. And, despite their graphic, they describe the ME-ICC itself with the ME/CFS definition rather than with the ME definitions. Their post refers the reader to Jenny Spotila's earlier one on PEM. Jenny's history includes the Oxford criteria (omitted from the graphic and discussion here) as well as the full CCC definition of PEM. Her discussion attempts to do justice to the complexity of the PEM experience (http://www.cfids.org/cfidslink/2010/060204.asp).

Thanks Ember for the link - it's been a long time since i have read this. I've been trying to find the rest of the series with no luck any ideas? I have to say what she describes in her article very closely matches my experiences - but as i have siad above also seems to match the experiences of some with other autoimmune diseases - although this is not widely discussed by their doctors.

Thanks for the link to the other thread Free - we seem to have started discussing the same thing on two threads. I have also been reading the M.E V MS thread (not finished it yet) and the similarities between all these autoimmune diseases is very striking - including the patients experience. It can take people with MS and Sarcoidosis years to get a proper diagnosis - it took me 17 years- and infact i havent been positively diagnosed by anyone - nor had other conditions ruled out.
Why are the researchers who are studying M.E/CFS and PEM not looking at patient experiences in other diseases?
I am beginning to think that only Dr Hydes very rigorous testing with spect scans etc can truly diagnose M.E. Or else we need a review of fatigue in all illnesses with a distinction made about 'our' particular type.
Rambling now because im watching telly at the same time (apologies)
Justy.

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I think its becoming obviouse justy, that the potential for mis diagnosis is huge. the diagnosis can often be so flippent as to be virtually meaningless. in my case i suggested to a consultant at the hospital i was refered to, look ive been reading about this condition called ME it seems similar. After i discussed at the end of the session so what do you think is wrong with me. she said i think it might be what youve suggested. I effectively diagnosed myself, with a hospital consultant agreeing ? then i saw a psychiatrist at such said hospital. who prefered the term CFS and diagnosed CFS, at that time he may not have even known what ME was. I was also classed as having CFS at kings college under there looking for cortisol changes, and one session with simon wessley, which was also very telling, because what i was describing to him was also a little more than what he belived CFS to be, i was describing symptoms of ongoing viral attack, very white face like food poisening. Weakness. fevers sweating. strange itchy sore throats. strange chest irratations. sometimes leading to the green phlem one gets after flu, or a cold. physical changes that were profound, that only ever happen during times of viral or bacterial infection. Yet did he seperate me from hes CFS criteria. Hes other CFS patients. No he did not. After one session. and a rather confused look on hes face during all the time i as talking. i was then left to get on with it. no more referals. no more trying to find a cause of the illness. the classification of either ME or CFS effectively was a washing of the hands of the problem. if i had got worse, and not slowly improved i may have died. like others have. Just like me, left to get on with it even though they are seriously ill. Its crazy. someone should send a letter like this to the prime minister. the queen. some one needs to know people are being misdiagnosed. confused diagnosed. We dont even know what we are diagnosing. or what state of the different Diagnosed criterias ME CFS PVFS someone is actually suffering from. back then. Many specialists barely had heard of CFS let alone ME. A doctor i was seeing, made a comment that somes this all up perfectly. When i mentioned my consultant said im possibly suffering from ME. He said ME whats that ? on hes wall was list of helplines. on that list was a phone number for ME support. I Saw it and said thats ME on your wall. He looked at it, as if to say whats that doing there. He still didnt know what it was. Things have improved but not much. i mentioned ME to one of my doctors recently 17 years after getting the ME whats that comment from the doctor back then. Guess what he said ME WHATS THAT. I said CFS he said ahhh yes CFS. its just a big massive shambles. glad i got better over the years, or they would have let me die, like they have others.

I couldn't agree more Free - everything you say makes sense to me - including the way the diagnosis was made, mine was very similar - more or less a self diagnosis with a doctor agreeing. For me i now wnat to persue alternative diagnoses. Proabably it will turn out to be M.E, but seeing as ive never had anyhting ruled out beyond diabetes and thyroid i think its about time. 4 years ago i was also told i had fibrosis in my lung, by a specialist who then said - oh but its nothing to worry about. Ive never heard another word since from him or my GP about it - looking it up on the net i see its quite a serious problem - and i do have ongoing lung and breathing problems whihc ive been left to manage myself. The dark patch on my x rays and scan was quite large, so how can it be that having lung fibrosis is nothing. How can they have not connected the dots and thought hmm - could be sarcoid now shes so ill with other symptoms. Its not just M.E patients who are being let down - i cant even get a straightforward answer about my lung. And the consultant left me on steroid meds for way too long because they forgot to call me back for an appointment and didnt tell me how long to take them for. I ended up with very serious immune supression and severe systemic candida and hormonal imbalance. I had to take in a paper to show my GP that it could be the steroids causing the problem - but still i didnt get any help. I had pneumonia and pleurisy for nearly a year - at times couldnt breath or speak and was coughing up blood and ringing the doctors 3 times a week - but they didnt send me to the hospital or do a sputum test.
When i told Dr Myhill about all this she was very shocked at it all.
What a mess - then they wonder why we get so messed up - i had severe anxiety for 2 years and still struggling with after effects of agoraphobia (reactive to the illness)
take care, Justy.x

Hi Justy, you are very right PEM is found in MS, Lupus and Sarcoidosis, but not only that it is also found in many other diseases.

The belief that PEM is exclusive to ME is nothing more than a dangerous internet myth that seems to have started by people misreading the diagnostic criteria, manly the CCC then somehow this false belief has become established as if it is a fact.

What the CCC says is that PEM is a cardinal symptom not an exclusive to ME symptom!

The CCC also says that this list of diseases must be ruled out because they can cause the same symptoms as ME/CFS I.E. they can cause PEM

All these diseases can cause PEM and it is far from a complete list of all the possibilities. No Sarcoidosis on this list.

Added to this what is described as the symptom PEM is not a description of a symptom it is a description of a group of symptoms which can vary greatly from patient to patient because they say it can be and/or pain, fatigue or malaise

Post-Exertional Malaise and/or Fatigue: There is an inappropriate
loss of physical and mental stamina, rapid muscular and cognitive
fatigability, post exertional malaise and/or fatigue and/or pain and
a tendency for other associated symptoms within the patient's cluster
of symptoms to worsen. There is a pathologically slow recovery
period.usually 24 hours or longer.

These kinds of symptoms are found in many conditions.

The ICC description is also not one of a symptom but of a group of symptoms that are found in many diseases, Again they say it is a cardinal symptom not an exclusive to ME symptom, and that other diseases that can cause these symptoms must be ruled out although this time they do not attempt to list them.

The truth is that PEM is found in many different conditions that also have the other symptoms being attributed to ME, and no reputable medical source has ever said that PEM is only found in ME, quite the opposite they have said it is found in many conditions.

failure to recover rapidly following exposure to normal physical or intellectual stressors occur in most if not all progressive terminal diseases and in a very large number of chronic non-progressive or slowly progressive diseases.

The unfortunate consequences of this dangerous myth that PEM is exclusive to ME, is that patients believe that having PEM means they have ME and therefore dont push for more extensive investigations to find the cause of their suffering, which can lead many treatable and in some cases fatal diseases being undiagnosed with disastrous consequences for the patient.

Although it is impossible to know exact numbers ME is a rare disease, if all the recorded patients from the sixty epidemics from 1934 to the mid 80s are added up it would be lucky to come to a total of ten thousand people, obviously this doesnt include sporadic cases, but it does show just how rare it has been and all doctors in these times who studied it believed it to be a rare disease. The invention of CFS by the CDC in the eighties has been disastrous to ME research. CFS is not a disease, and not ME, it is a group of symptoms hastily put together by a small group of CDC doctors with almost no experience of ME patients, these symptoms are common to a vast number of diseases, it is a meaningless diagnosis of a none existent disease. Since then it has been promoted as being the same as ME and the numbers of people diagnosed with it has exploded with estimates going as high as 17 million, the majority of these people are misdiagnosed and have another known disease not ME. Dr Hyde finds about eighty percent of his patients dont have ME they have another disease that has been missed by the patients doctors failing to investigate them properly. So it looks as if the chances of having an undiagnosed known disease instead of having ME are far higher.

You are also right that tests that show mitochondrial abnormalities, oxidative stress, low antioxidant levels and high cell free DNA, are found in many other conditions, these tests do not diagnose ME all they show is that you are sick with god knows what, which you already knew.

I dont doubt the likes of Jason and Evans good intentions, but the continual attempts by various groups to re juggle the symptoms of ME to come up with a working criteria are largely a waste of time. The symptoms of ME can vary greatly from patient to patient and overlap with many other diseases it is impossible to write a set of symptoms that prove that the patient has ME, it can only ever mean that ME is one of many possibilities, and the patient will then have to have all other possible diseases ruled out before they can be diagnosed with it. Unfortunately despite the fact that this is a scientific and common sense approach it just isnt happening and ME or CFS diagnoses are being given out at ever increasing rate often with an appalling lack of investigation to rule out other possible causes leading to vast numbers of people suffering needlessly.

On a personal note Justy, Im saddened and disgusted by the lack of investigation you have had, and appalling treatment and really hope you can find a doctor who will take you seriously and properly investigate you to see if any other diseases have been missed!!!!

I agree 100%. I would say that PEM is a good distinguishing characteristic of this disease early on, and may be useful for early diagnosis.

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I dont even agree with that. I didnt notice PEM for the first year of my illness when I was going like flu like illness coming in which was on and an off thing. I then got hit with major PEM after that.

I think too people define PEM differently even in our own heads. Someone who has suffered with severe PEM in the past may not want to view what they have now which is different as PEM.

I think nothing should be being based on what we "think" but rather how we test with a 2 or 3 day exercise test to see if that person is being majorly postexertionally affected or not.

I'll never be happy with definations which are based on no actual tests!! and just perceptions.